Quantcast

Eagle Syndrome - Online Support Group

Who has been helped by surgery with this awful disease?

Thanks for sharing your Story CoCo . I wish you the very best with your surgery and treatment. I hope you get relief and encourage me to get the guts to do something about it myself. I have many similar symptoms as you. Especially with the twitching. Mine always bothers me the most when I lye down to sleep and put pressure on my neck. Such an awful syndrome and I feel for everyone who suffers from this terrible condition. My thoughts are with you on your journey, please share your outcome with me. Thanks

This is great that everything worked out for you. Thanks for that information. I hope you have alleviated all of your symptoms and that you may feel normal again. Please keep us posted how thing are going as you progress.

1 Like

Thanks Meman, I will definetly keep you posted on the outcome of my surgery.

Hope it goes well, lots of info on here about how to prepare & what to expect if you’ve not read that yet…will pray for you!

Thank you!

Thank you Jules, I’ve been reading lot here for the past 2 months it’s been extremely helpful and encouraging. Thank you all for sharing your stories it really does make a difference.

1 Like

Hi coco,

Thank you for sharing your story. I will keep you in my thoughts and prayers as you head to your surgical date. I am 2 weeks post-op from surgery on the left and lot of my symptoms are gone or diminished. I am hoping that some continue to diminish as the swelling goes down. My biggest suggestion for surgery is research this site for post-op suggestions…you are a lot younger than I am so don’t try to over do it…listen to your body. I set some physical goals of walking and pushed myself too soon because I was feeling so well and had some bad days…pace yourself. Be gentle with yourself as you heal. ICE is your friend as is elevation using a wedge pillow. I sleep in a recliner too sometimes that helps the vascular symptoms and seems to put less pressure on the back of my head where I get some lousy headaches. I ate a lot of protein/collagen and my incision is healing great. Soft foods will be your best bet because chewing can be a little rough. I like protein shakes and made a lot of those. Best wishes for some peaceful days leading up to your surgery. Keep us posted on your status.

Kay

2 Likes

Thank you Kay for all your advise. I will definetly follow it, I definetly want to have a smooth and fast recovery:-)
Wishing you all the best for your continuing recovery aswell.
Coco

1 Like

Hi coco,

So you’re taking the GIANT plunge & having bilateral surgery in one fell swoop. It will be nice for you to be done w/ Es in one surgery. Just a heads up that it will take you a bit longer to heal & your pain level will likely be higher post op so don’t be discouraged if you can’t jump on your feet & go within a couple of weeks post op. Since you’ve been reading a lot of posts, you likely have an idea of what to expect after surgery.

I will also pray for you to have a “text book” surgery. Please remember that we are here for you & want to support you however you need as you recover.

:rose:

2 Likes

Thank you Isaiah, eveyone here has been incredibly supportive and I really apreciate everyone’s encouragement. I will keep you all posted on my progress.
Aloha

1 Like

Thank you, coco. If I counted correctly, your surgery was today (or tomorrow?). If it was today, I hope you aren’t in much pain & that you’ll be back on your feet soon.

Ice your neck often - 15 min on & 45 min. off 4-5x/day. Sleep w/ your head elevated up to 30º which is almost sitting; stick w/ your pain med regimen for at least the first week post op. Days 3-6 are when the swelling will be the worst & when you’ll feel the worst. Know that after that, you should start feeling better bit by bit. It may be baby steps toward healing but even those will help you get well over time.

:hugs: Sending a gentle hug

1 Like

Yes, hope & pray all went well & that you recover quickly, & soon feel the benefits of surgery!

1 Like

Hi all, my bilateral styloidectomy went well yesterday no facial nerve damage just a little numb on the left side of my cheek tongue is fine, jaw area is just a little sore, they had to put in a breathing tube but it just feels like I have a sore troat. I was discharged the very same day which was great. Was pretty out of it yesterday and had some pain, I tried to manage it with just tylenol but eneded up giving in to the stronger pain meds I was prescribed. Last night was uncomfortable sleeping but I managed and have been iceing the areas off and on which is helping tremendously. They took off 3cm on both sides. So far its hard to tell if my dizziness is gone with all the swelling and side effects from the pain meds. I know that with time everything will improve. I am uploading a photo of the styloids that were removed, my left side was very interesting as it had a sharp point end looks like a rose thorn. I cant believe that was in my neck pushing against my jugular vein. Crazy. Glad they are out. Thank you all for thinking of me and following up. I went into surgery with such a calm positive mind set thanks to this incredible support group. So much kindness, knowledge and encouragement. Cant thank you all enough. I will keep you all posted of my progress in the upcoming weeks.Screenshot_20190918-174352_Gallery

Thank you for the update, coco! Hoping you heal quickly & are back out competing again soon! So glad all went so well for you.

If you feel comfortable sharing your surgeon’s name & contact info, we would love to add it to our Doctors’ List as I don’t believe we have an ES doctor listed for your state.

1 Like

Glad that you’re home & can get on with healing! Make sure you take it very easy, keep up with the pain meds & icing…best wishes & God bless :bouquet:

1 Like

Thanks for the update…have kept you on my prayer list and was hoping all went well. Listen to your body and take one day at at time…each day will be different for the first week post-op I found so I just rest, find a good book or movie and enjoy! I bet it feels good to be rid of those nasty styloid processes! Rest well…

2 Likes

Jules, this is so great that you dont have any nerve damage to face. I hope everything heals quickly, and you symptoms are gone. Hard to believe those little bones can cause such havoc on a person. Thanks for the updates. Get well soon. Good luck going forward.

1 Like

Aloha Meman, my Dr. Is already listed. His name is Dr. Scott Newman he works for Kaiser here in the state of Hawaii. He is amazing.

1 Like

I would love to be able to find a doctor like that somewhere where it could be affordable for me to go and treat, but there is no way I could go there to treat. I am gonna have to find someone in my area if I need to do it. Doing some ultra sounds on my Carotid artery first, and I will decide based on the results of that whether or not I treat this surgically. I am 53, so I may need to do it sooner than later.

Meman,

Please make sure that your head is in a “provocative position” when you get those untlrasounds. If your head isn’t in a position that causes symptoms when you get that done, everything will appear normal.